Abstract
BackgroundMany patients living with IBD identify diet as a key factor in managing their disease, symptoms and general health, and many report implementing dietary restrictions in response to disease activity and symptoms. Despite increasing data on the role of diet, IBD patients face a variety of challenges that can compromise adherence to dietary recommendations in clinical practice.
AimsTo identify IBD patients’ perceptions regarding barriers to dietary modification and to understand their experiences and expectations of dietary advice from gastroenterologists (GI) or dietitians (RD).
MethodsA mixed-method qualitative data collection strategy with semi-structured focus group and individual one-on-one interviews moderated by a clinical psychologist over a web-based, video communication platform (Zoom). Adult IBD patients (between 18 to 75 years old) attending the McMaster University Medical Centre IBD Clinic were invited to join a focus group consisting of 2-6 individuals or a one-on-one interview. All participants were asked to complete a demographics survey (REDCap) before the session. Recorded audio files for all sessions were transcribed, de-identified and reviewed for accuracy by 2 reviewers with an independent adjudicator to resolve discrepancies followed by thematic analysis (NVIVO).
ResultsBetween May to December 2022 and May 2023, 38 of 90 invitees took part in 11 focus groups and 9 chose individual interviews. Most participants (mean age 42 years; 60% female) were Caucasian (87%); 42% had a self-reported history of mental health disorders. Mean IBD duration was 16 years (min-max: 0.5–44 years); 73% were in remission and 68% had Crohn’s disease. Thematic analysis identified 5 primary and 11 secondary barriers to dietary adoption (Table).
Participants reported positive and negative experiences with dietary advice from GIs and RDs; expectations included GI referral to a specialist RD and integration of an RD into the health care team.
ConclusionsIBD patients report multiple, varied barriers to dietary adoption and identify a need for improved access to dietary advice and other resources, including integration of RDs into primary and IBD Clinic care teams. The identification of multiple, varied patient-reported barriers offers an opportunity to develop personalized dietary advice for IBD patients to enhance health, well-being and quality of life.
Thematic map of barriers experienced by patients when adopting dietary modifications
Primary BarriersSecondary BarriersDifficulty identifying foods or diets affecting IBDLack of guidance in identifying foods or diets
Difficulty correlating symptoms with dietBarriers to accessing IBD diet foodsLimited availability of IBD-friendly food options
Expense of speciality food itemsPsychological FactorsAnxiety in relation to food
Aversive attitude to foodPersonal struggles with diet adherenceChallenges with diet protocol complexity
Changing habits and lifestyle
Avoiding food cravingsSocial and family challenges in dietary implementationStress and pressure when eating in social settings
Challenge integrating family’s needs into dietFunding AgenciesFarncombe Family Digestive Health Research Institute; Douglas Family